Taxol5

DAY91

Back from such a great weekend at Bear's Picnic. A short weekend- but so totally awesome.

I am blessed for the wonderful extended family we have in the musical world that transcends state borders and facebook ---- We were helped out a lot by our friends who saved us a camping spot, made sure we knew where to go and allowed us a nice big shady area to hang ,  meet new folks and stay cool under. And hear soft acoustic music as well.It was such a great time and I don't have enough thank yous for everyone who we crossed paths with this weekend merrily.
Proof that music heals- Mark and I wound up front and center for the Mickey Hart Band saturday night and danced HARD. and Mark does not dance! My legs did not hurt nearly as bad and I got over the pain, was hurting by the end- but toughed it out throught the last song and needed to sit down for the encore-
Hell- I TRIED and did it. :) YAY!
His music of the universe is something to behold- I missed hearing music like that so much and it just filled the cup and it OVERFLOWED.
Simply amazing. Words cannot describe what original music like that sounds like... FEELS like is more like it.
We just are in awe of the music that finds itself before us that moves us, moves our hearts, and fills up an inside space akin to the heart. That was one of those moments in time and space where you could feel the music around you- pulling everyone together in unison like a collective float of stars in our own galaxy- each one, a cloud 9.
Crazy. It felt so healing.
If that doesn't work wonders for the cells, then prayer is a farce.
So I soaked that stuff UP.............
Mark's Juggling Suns Project really did it for me too, it's been such a long time hearing such familiar stuff, I was full of joy just soaking that in too.
I love my husband's music- and he played the song about Magnolia Road too. **tears**


The weekend just wiped me out though. Very tired. Lots of bone pain... If it is from the dancing- then good. It was well worked for. The pain is slowly getting more and more intense and sharp.

My sister and her husband and daughter are also up from North Carolina staying at my mom's house, so my sister was able to come with me to the chemo appointment today in Mount Holly. It was great. We shared the room with the Cheetos lady, the Vietnam Vet from a few weeks ago, and an 89 year old vet with lymphoma- who was in WWII, Korea and Vietnam as well. The 2 vets had the same cancers and would put money on that being the reason for their affliction (Agent Orange). The 89 year old guy also was getting the red chemo I was getting at first. Oof that stuff will knock you out.

A little trouble again getting a vein despite being really hydrated, I just hate when the nurse wiggles that giant needle around to get some blood to draw and get that iv tube in there....- UGH.
We got it on the first shot and rolled from there- It was a quiet day in the chemo room. I'm really glad my sister came out too.
Chemo went alright- Britt got to enjoy a drive through the Pine Barrens and see a NJ that doesn't get props very much for its great soil, blueberries and satanic children that jump up chimneys after birth.

I am home now and really very tired. My bloodwork was ok- my WBC and hemoglobin counts keep slowly down- but not to dangerous levels.
I question if I'll have the energy to keep it up again this week.... I hope I do, but the well to draw it all from is drying up.
I do feel pretty great though- my legs just don't like to feel good. and sometimes their friends shoulders, fingers and elbows join them.

Hitting a wall and getting dizzy as I type this..... Need to lie down and rest. for real.

Happy Birthday Melody Xi

DAY87

It's Melody's Birthday today!!!
My holy terror love bug is 2!
Terrible Twos, times 100. lol. I love her though and she and her sister are my heart, and I wouldn't give them up for anything.

Having a better week- both my boss and husband tell me I'm seeming better- despite my eyelashes and eyebrows consistently falling out , that I look and sound good. I still crash like a Mack Truck with no brakes in San Francisco- HARD- but the levels of fatigue are rising- it's nice.
Work has been kicking my ass since there all of a sudden is a lot to do and helping out my helper get stuff done. Probably one of the last times I will be doing it since this work is not kind to fingernails, hands, feet at all. Taxol causes lifting of the fingernails and toenails- great caution needs to be taken in cases of this since they may have to be removed by a professional in the case of it getting real bad. They turn purple and start to literally break off .
I'm scared of that. So I need to be careful at work and not do the things I did with my fingernails in the past.
A few weeks ago I smacked my fingernail at work with a rubber mallet accidentally and it's hurt ever since. Eek. It's the middle finger ironically. I think it's gonna go downhill from here.

Bone pain has been here and there- nothing really major until late at night- but by then I am totally beat exhausted and dead to the world in bed sleeping by then. I am having some insomnia lately- which doesn't help when I have to be at work at 6am. I crave the weekends. I am allowed to go home during the week when it gets rough, so thankfully I have that because my boss is awesome.
Generally achy too- but I haven't been able to make it to the chiropractor since last week - so I need an appt. there too.
and I'm thirsty ALL THE TIME. I can't get enough water.

I finally got my surgery date too- November 9th.

What is with the 9? I love it- it's my fave # of all time. I got married on 9/9 (Our 9th wedding anniversary was 9/9/99) , I was born in the 9th month, I found my lump on the 9th, I was given my diagnosis on the 9th, and now surgery on the 9th. I have a buttload of instances where 9 keeps coming up in my life- Ernest Borgnine, I even have a tattoo of the number 9.....  but now it's gettin' freaky.
Someone once told me John Lennon was the same way with the number 9 too.


So excited for Saturday's trip out of my bubble- I am really having live music withdrawls and I'm missing what a regular summertime usually contains.... Almost here. Just one more day left of work and I head out past the tolls and into Amish Country.
!!!!!

Taxol #4 day

DAY84

Taxol #4 Today!

It was a trip again to Mount Holly with mom to Virtua for Taxol infusion #4.
It's been crowded lately with some waiting time.
My blood results once again was great, but Phyllis kind of lingered a little longer when doing an exam of the axilla lymph node- the big 'un I originally found that brought me to this moment.
I feel it inside sometimes, sometimes it has a very small ache to it. Phyllis said sometimes it's rub up against nerves and irritate it. Either way, feeling it I'll never like or get used to.
So said it didn't seem to change much size. Or 'get any bigger'. So I guess that's ok.
It was kind of a weird feeling to hear that though if she examined it for so long.
Hm.
No biggerness allowed.

I got right into the quiet chemo room again- The lady with the Cheetos that one time was back again, along with the ladies where 1 had the rectal cancer and didn't lose her hair, and the cute little 77 years young  lady with colon cancer. The little old lady was on her last chemo - which was great to be apart of. They drew smiley faces all over her big plastic bags filled with drugs and on the IV bags.....
And there was a guy doing his first time with colon cancer as well.
I seem to be the only one without a port , so I take my ativan, am prepped for the IV, and in comes a nurse tht hasn't stuck me yet. I've seen her, but among the 5 constant nurses I see, she hasn't stuck me yet. First vein. No hit.
She had to stick me 3 more times to finally get a vein in my hand. It was really painful. It still hurts now.
Mom the paramedic kept making faces as the nurse kept sticking me, and eventually was kneeling on the floor as my arm dangled over the edge so a vein could pop out, whacking me with her finger.
The nurse I think was pissed. I was embarrassed.
Eegads.

I guess I have to hydrate a little more before chemo. Bad me.
I keep getting less and less steroids every time, and that's good. I'm 1/3 of the way through.

2 hours in the room and I am now home, tired and ready for sleep.easing into achy legs for the evening and not a fan of Vicodin still.
Ready for work tomorrow and what the week will bring ahead.

I feel much better today- and I felt really good yesterday too to enjoy a Sunday with my family at the farmer's market, Target, Costco and BestBuy (for a new iPod since my little 2 year old terror decided to teach the iPod touch to swim  when no one was looking), and we wound up at the Seaside boardwalk because Point Pleasant was just way too overpriced in parking and very crowded. Melody hadn't been on a boardwalk ride yet so we were excited to take her, and Azalea was super excited to ride rides with her little sister.
The kids had so much, we got really good dark chocolate at the Berkley Sweet shop - because eating dark chocolate is good for cancer patients I read- so I'm gonna run with that, thank you, and we just had a great time. My energy was great and kept up with me as long as I took it easy- I came home, I sat down,  I crashed. The Vini Vidi Vice of chemo.
It felt nice to have normal visit me again.
Phyllis says that these days will be more frequent too as the original chemo regimen (the AC) leaves my body. it takes a while.
AWESOME!!!

I feel more of myself now than 4 days ago. Maybe it's the drugs or a more permanent veil lifting overall.....?
Still no surgery date.


I am also really having the urge to draw - I need to start on the album cover and artwork for the husband;s new CD- get the visual design part done - I'm psyched to churn out some organic lines. and color them in.
I need to get more wigs too. I'm getting used to the idea of having funky hair I can remove.
yay.
goodness is around.
enjoying every minute of it.

....go give someone a hug, people.......
love&light
xo
b

Why Be Normal?

DAY82

I have officially resigned from the school of Mind Over Matter.
Normal has gone out the window and I just have to STFU and deal with it.

Bone pain is getting more intense and more frequent- It feels like distant ditch diggers that live in the depths of your bones either scraping the insides out, or pounding you with large dull hammers. Every so often. Mostly in my legs- but not limited to my shoulders, my arms, my fingers, my ties, my feet, my knees and ribs. I think I covered it all.
Enough already.

The temper tantrum loving , headstrong 2 year old doesn't add to the fun either.
I'm whining, yes- but dude- nothing feels normal anymore.

I was able to drag myself out to the Shoprite yesterday but it was a big shopping trip and I would not have been able to do it by myself. Or with kids. Mark came out with me and helped so much. Kids were with Grandma.... Grocery shopping was a feat of strength. I looked great though. When I feel like crap, I barely want to put on any makeup or anything- I just throw a hat and sunglasses on and go.
 As I was getting ready for Shoprite, I had a scarf on my head and big hoop earrings. I looked in the mirror and saw a scurvy pirate. I just needed a sword. As crappy as I felt, if I had to go out and capture toilet paper in bulk on sale , I was going to look fabulous at least and not like a scurvy pirate. It was a great lesson. Eyeshadow can regulate a bad feeling very well I found.

I don't like driving sometimes on this stuff . I feel detached from what's going on around me since I don;t feel like my existence on this plane is normal at all. It's a strange sensation. So weird.
I can't make plans, I feel crappy all the time, I am able just enough to get to work; but nothing seems to be accommodating this stuff, though. And in my dreams, I have cancer too.

The drug is like a temper tantrum loving,  headstrong 2 year old! Wow- a revelation just now!
and steroids!

Fun times.
No surgery date yet.....
Today I attempt back to school shopping with Azie.

tomorrow never knows

DAY80
Wow. 80 days already??.... It's goes by so fast, and the slowest at the same time.
80 days of my body being bombed out in a chemo blitzkreig.

about 60 left.

No word yet on my surgery date- something is taking very long that shouldn't, and I'm a little worried because I just want these dates set. I need something to circle on a calendar.

Tonight the kids are gone and Mark is at work on the boardwalk tonight. I'm feeling like yuck. Super tired and the expected bone pain.... Ugh. A headache is forming as I type.

I'm just trying to get ahead of what this drug is doing to me, it's like staying afloat and above water in a hurricane at high tide. Between emotions and the physical- it's a hell of a swim.


And I hate hate hate painkillers. I have taken them for pain, but I just do not like their vibe and effects and the whole blech of them.
Right now- the fact I want to chop my legs off because of this bone pain is enough to make me reach for the Vicodin, although I'm waiting as long as I can. Today all the bones are singing their song in unison. Loudly.
I did manage to get in about 4 hours of work done this morning, I wonder what tomorrow will bring. But alas, tomorrow never knows.
words of wisdom.

There's an ice cold super green kombucha waiting for me in the fridge at least. But someone took the ice cream. Hm.

post taxol #3

DAY79

Pretty exhausted today - I managed to get in almost a full workday -
I'm anticipating a day or two after this of pure tired.
It's already starting.

This trip to chemo this week was a great one- I didn't even notice the nurse changing out my IV - great conversation between 3 other ladies and myself. The one lady sitting closest to me, probably in her early 50s, a cute lady who reminded me of Phoebe Snow, had metastatic breast cancer. In 1983 they gave her little chance, and she's still kicking butt. With 2 recurrences of breast cancer, unrelated ovarian cancer, bone marrow cancer and bone cancer. She looked great and her attitude was awesome. I gave her the little jar of turkey tail in my purse- her breast cancer was all hormonal too. She told me she'll never dye her hair again. She has Dr. Cairoli too.
Almost 30 years living past the few months her doctors gave her- what a chick.
After the week I had last week, I'm really glad I met her. I need to start looking at things differently. It's funny how you think you can figure something out, yet there's always a higher lesson lurking around the corner.
It's a cosmic spanking.
My visit with Phyllis showed no change in my tumors. She told me to tell people that I am "stable". As long as the lumps and bumps don't grow, we're doin' good.
They won't know the entire picture until they get out and test what they take out of me with surgery.
So there's still a piece of the puzzle unknown yet.

It's a long road.

This steroid crap is for the birds too.

I'm doing my best to get up the energy for things, but it's impossible. My brain is scattered a lot too.
I keep forgetting EVERYTHING. lol.

Really psyched to get out next week to A Bear's Picnic. It's a festival in Pennsylvania. Mark is playing that as a gig, I get to see some awesome people I do not nearly get to see enough, and Mickey Hart is playing too. Eek! So excited!!

Another chemo eve

DAY77

Merry Chemo Eve once again.

I started taking Turkey Tail. It's a medicinal mushroom in nano powdered for so it goes right into my bloodstream. It rocks at protecting my body from the ravages of chemotherapy, has been known to kick tumors' asses, and looks good doing it.

It's so pretty and tie dyed looking. I love it so much and happy to ingest such gorgeousness.
Thank you mama Summer....

The family and I went out to Nature's Corner in Spring Lake today to stock up on some more beets, celery, and pick up what we could to carry us through an immediate chemo round and it's aftermath, Kombucha of course.

I ventured over to the raw section of highly expensive food in half ounce containers. It was missing a price tag but it was a half pound bag of organic raw trail mix labeled as an immune booster. Of course I grabbed it and joked to Mark that it was probably 30 dollars. It was the only item on the shelf whose price tag had  mysteriously disappeared. I put it in the basket anyway not remembering to do a price check at the register.
I was wrong. It ended up being 13. eek. whoops.
It's delicious though.
Maybe if I plug them here they'll find it and send me more for free for advertising for them....
Gnosis Chocolate! Buy it now! It's great!!Click here!!!

It really is great though. Seriously Gnosis Chocolate people- you have a fan.

Got some chips and superfood bars to carry me through the after hours of not wanting any food and bouncing all over the place loaded on steroids.

Nice 10am chemo appointment roday, looking forward to another drive through the gorgeous Pine Barrens. At least that's a high point of the day. :) I will always love that drive.

I don't even want to talk about the Yankees..... *sigh*......


love and light*
b

the dawn of a new thinking. sunrise of the soul.

 DAY76

Time for a new skin.

This new chemo drug is some heavy stuff. As I discover a new twist in it's maze every day.
I boiled over after a very crappy week. Lost my temper, got very upset. I just let it all out. You can only be so jolly for so long before the cracks start.

So the old skin of this first run of chemo cracked and peeled- and finally was shed- I feel exhausted but an odd brand new at the same time. Now I'm not sure if the steroid stays in my system this long either- but something is causing my mind to race and make me restless. I have no control over it.
I'll talk to Phyllis about this Tuesday when I go in for Taxol #3.

So yes- it's been , shall we say , psychic this week. A purge of lots of pent up energy and emotion, the tide spilling over the sides of the sea walls finally after a rough storm comes in.
Crazy.
I do my best to keep happy, to keep busy. Keep reinforcing myself to keep going.
Go go go.
But at some point the weight gets too heavy and the sea wall explodes into a million pieces. spilling all that swirling oceanic destructive majesty everywhere........

So that's what happened. Sea wall is back up and higher now. Because I see how this stuff messes with you, It feeds off that anger. Rising above being angry at something you can't see is a pretty good idea, because it's pretty stupid to be pissed at something you can't control. Like the weather.

Why waste my time?

I feel so good right now though to let the skin go....go out to sea.
My legs feel awesome today too. No baseball bat pain yet.

And the Yanks are currently beating Seattle right now - they've been losing a lot lately. :( My father would change the channel during sad games like the ones in the past and grumble...calling them the 'Dead Bat Society'. Haha.

Azalea comes back today too from 5 days with Mark's mother and sister in Connecticut. They took her for a few days and took her shopping and out to a movie and fun stuff like that. I'll be psyched to have my family back together again tonight. Mark met his sister at a family reunion in Northwest Jersey today to get her and took Melody with him so I get a much needed break to rest. back to work tomorrow morning.

As far as other body things go, I haven't had much of an appetite lately. Just tired and thirsty mostly.
My eyelashes keep falling out. Same with my eyebrows. Which is kinda cool since I am of the Mediterranean persuasion and eyebrows are furry usually...like caterpillars go wild if left unkempt. So i don't have to worry about waxing them anymore. lol. I would like them to stay right how they are now though.
The hair on my head is still kinda stubbly and patchy, but more is gone.
I am having a Lex Luthor looking day.
2 days ago, my liquid liner got in my eye, and a few eyelashes went with it and my eye was all weird and pink and gross. It's better today. Oh well. I guess I have to go out and get new liquid liner now.
Beauty supply store therapy session is in order soon.

I also went for the big genetic test on Wednesday at Virtua in Voorhees to see if I am BRCA1 /2 positive. If so, the rest of my siblings might have to get tested as it is recommended. It was a 3 hour test of counseling, mapping, countless questions, more scary stuff, and me spitting into a vial. I was so glad this was not a blood test. Basically they test my DNA to see if I have a gene that is faulty that would explain the cause my cancer. This gene also indicates a predisposition for prostate cancer, pancreatic cancer, breast cancer recurrence, and ovarian cancer. In that case I would have to get my fallopian tubes and ovaries removed after the mastectomy. I am opting for a double even though no cancer was found in the left one regardless.
I am not going through this all over again. My kids don't need to see that either. I will find out the results before a Taxol visit on August 28th.
I worry they won't have enough belly fat to make new boobs when surgery rolls around. If this is the case, then I will happily volunteer the fat sticking to my hips and thighs for donations. I can get a few sets of boobs out of that right there.
I will ask the surgeon. I hope he laughs. He's a pretty serious fellow. Last time I saw him, he was sticking giant core needles in my armpit and breast. Nice way to meet someone.

As i typed this, I got a surprise visit from my coworker who brought me flowers and kale. lol. Good thing I had the hat close- No time to assemble all my 'parts' (eyebrows, eyelashes, head covering, etc)- i just put on a hat. Oh well. lol. Thanks, Mike & Meghan :) . That was a sweet gesture.


And we had a strange occurrence earlier today where my van's doors unlocked themselves, opened and shut and locked itself back up. Poltergeists. I still can't figure it out.
Or it just could be all that lovely fragrant bedding a band keeps in their van on the road trying to get out to a washing machine.
Weirdness.

Love & Light*
b

Not On your Life

DAY75

Sorry for the delay in posts, folks- I would love to be the positive bouncy Tigger, but this week has been very taxing on the spirit, soul, body and mind. I'm just feeling beat up everywhere.

This week has been back at work, making the best out of it- and doing what I can, but the drug knocks me down. The idea of having cancer knocks me down. It hits me in the legs with baseball bats. It tweaks my head. Like a twisted jarof Hellman's, it brings out the best. It makes me react. It makes things fucked up and it brings back that stupid ego in thinking that I should have a better ride with all of this.

I wish I could say that this has been a walk in the park, but emotionally it's a walk through something less than fabulous. More than I ever expected it to.
I've reached a point where the fight exists, I just need to pick and choose how the fight applies in reality.

I walk through the valley of death, the valley of life, the valley of sparkly eyeshadow, the valley of liquid liner revolting on you and giving you an eye infection, the valley of silly, and the valley of alone.

Lots of valleys.
.......
*ergh*

...better days are ahead.

Taxol #2

DAY70

2nd Taxol today.....
It wasn't such an early appointment this time- 9am- which made it bearable.
My mom drove me and Azalea came along. It was her first experience seeing her mother in a chemo room, and with other cancer patients. Mom took her down to the cafe for breakfast while they started my IV so she didn't have to see it.
All the nurses were really excited to meet Azalea. They all loved her name.
We had a full chemo room with a Vietnam Vet with Non-Hodgkin's lymphoma, a fellow breast cancer mama, a woman who had rectal cancer but the chemo didn't make her hair fall out, and a cute elderly lady with colon cancer. My mom is a 17 year survivor- and the little old lady and the lady with hair were both nurses, so my mom had a good time talking to them. She loves to talk about the hospital work days with someone who understands the lingo. Thankfully for that same lingo, I am able to follow House a lot better since I've grown up hearing about intubations and tachycardiograms and pulseoxes. Or is that pulse-oxen?
Oh well- We had a laughing bunch today-
I love meeting the different people. I still have yet to meet someone around my age in these rooms. All of them are at least 20 years older than I am.

Half an Ativan, Benadryl- - nicely tired for the Taxol infusion. The ride home was nice.

I came home and wanted to sleep, but my mind was going a mile a minute and despite the home heart monitor's readings of a normal rate- I felt like I was getting an anxiety attack and felt like crawling out of my skin. Just jumpy. Maybe it was the Dexamethasone. But it felt weird.
I suspect crashing really hard tonight.

Mark drove me to the chiropractor after I got home from my appointment for a good adjustment. I find these really help the chemo experience. Between the stress and the drugs - your back gets pinched, not to mention the annoying as hell leg, knee, finger and hand bone jingles.
I feel much better after visiting Dr. G and I am able to relax a little bit better after seeing him, which makes for a nice happy environment for the tree drug to flow and go.

Still feeling anxiety a little bit today.
I go back to work tomorrow since I felt awesome last week. But i am not making any assumptions.
I will do my best to manage this and do my job and get things done.

........

So as I sit and view this orioles/yanks game- with Baltimore up by 1..... I have the urge to sleep and create at the same time. i cannot sit still so I managed to get it out by typing- and I painted my toes shades of green. Thanks Mel :)
I ironed out my ever evolving hexagon sewed pieces- then I got antsy with that and needed to do something else.
So now I find myself banging on little lettered keys, enjoying the sound of 57 words per minute on plastic.

Mom took Melody tonight while Azie and I stay home and Mark rocks out in Seaside tonight. The quiet is welcome after last week's sick run from mom so she couldn't take the baby. Mom thought she had West Nile Virus, but now she's better.

Need to sleep, paint, draw, sew, paint, sleep, draw, pencil sketch, ya ya ya..... Bone pain creeping into my legs and back right now.... YAAAA!



what the hell is the matter with me? lol. I need to go to sleep to wake up early for work tomorrow. I hope I can pull it off.
ttfn
xo
b

draggin' the line

DAY67

Trudging through the Taxol dose.... It just has to be the leftover AC running through my veins that's kicking my ass. Everyone says Taxol is so much 'easier'.
This is the third day of TIRED. I have never been so tired in all of my life.
I was awake for 42 hours straight once- 26 of those hours in hard labor with no pain meds. 2 hours of pushing a baby out of my body.
I was tired after that- but that doesn't come close to this. At all.
I managed to make it out to a small farmer's market in Bay Head for about 15 minutes yesterday- Mark had to drive.
I needed fresh air badly and we were about a tenth of  a mile from the Atlantic Ocean- the breeze was divine.
So we go every week now- putting on my boots and getting ready for the battle. No off weeks this time, gauging work and drugs every single week till October now- not knowing what every day is going to bring.
I do have a respect for the spirit of all that lives on this earth- plants, trees, people- Taxol being from the yew tree, I looked up more on the yew and was pleasantly surprised to read about it's mystical roots going way back thousands of years as being a poison tree, but one that does not die. It symbolizes rebirth, renewal, life, and is highly revered among those into the plant kingdom's healing tools. The spirit of this tree, it's all it's grand poisonous stature contradictory to it's eternal life and healing compounds, is inside me right now.
This is the different feeling. It's more organic and body friendly. But mentally, very different.
I'm wacky like this. But I honestly believe in the divine nature of all living things. Every living thing on this planet is connected. Truly.
It makes it easier to make peace with this drug knowing it's roots.
(hah hah- roots. I made a funny)
I started putting the yew into the latest art piece I have been working on too.

Every day, it's like the giant wheel on the game shows- each section is a new symptom or feeling when you wake up to a new day. Right next to my bed the minute I open my eyes.

Spin the wheel!

Yay! Today, you landed on Neuropathy. You'll be magically whisked away to a....chair! to put your feet up and experience the thrill of pins and needles, dull pain and numbness in your feet and hands all day long!!! yay!!!!
I am manifesting spinnning to the one section that says "GOOD DAY" every day.
Gonna do my best to get past this drug funhouse. Lots of B6, 12, Glutamine and exercise when I can.
And my nails. I think of you every day, Nancy when I look at my nails, and I can hear you in my head to take care of them. :)
One don't really realize how much they use your fingernails every day- Dishes and laundry have become Mark's job.
I cut them down the other day and painted 4 coats of nail polish on them, with the hope that it will keep them from becoming ugly and coming off of my fingers. Toes are next to get glittered.

I'm on a ship at sea, with no charted course right now. Just me, my boat, my poison tree and a big prize wheel. and a LabCorp technician to draw blood every Friday.

have a delightful weekend folks. Hug a tree :)
xo
b

I, Science Experiment

DAY65

Day 3 of Taxol is going ok so far- I'm staying home from work this week to let the drug settle in and get rest and gauge how the future weeks should be. Yesterday I felt ok. Pretty great actually.

My friend Beth and her son Silas came over yesterday and spent some time - the kids played and shared crayons and had a good time. Beth gave me a collective effort of a bunch of really awesome women- a set of flags - with each flag designed by a lovely and awesome friend using fabric scraps, and words of encouragement and love on them, decorated every which way- and Beth sewed them on a single ribbon so I could hang them up all at once. Like prayer flags. It was sweet and I cried and every single flag means so much to me.

I also had the appointment with the reconstructive surgeon yesterday in Moorestown to decide on what protocol to go with on surgery- it was discussed and I'll have what they call a "flap" surgery- which basically is me getting cut from hip to hip- they take the fat out of my belly, and then make new boobs with it, insert them to their new home in my chest and there I go. No implants, because it isn't recommended to go through radiation with. And Dr. Patel assured me that I had enough around my belly to make a fair set, so here I go building with some ice cream. It's weird - but it's something I'm looking forward to- the tummy tuck and boob job. Granted I won't ever be starring anytime in a Russ Meyer movie, but it's a little bonus at the end. A little gift as I see it. or 3.
It involves very tiny microsurgery to sew together veins and arteries to keep the blood supply going- as long as that works, the procedure works. Which I have faith in. I got rockstars from Fox Chase right here.

I also took Azie to AC Moore for a little trip with just us and a gift for her for being such a big help and awesome big sister. Crazy exciting day. Watch out Keith Richards!  I got your number and probably more drugs in my system today than you've had in any hour of the 1970s! Look at me go.

Nearing the end of a wild day fueled on steroids and chemo medications, I put the kids to bed and settled in with a late Yanks game, to which ended up with A Rod getting his hand broken by this King Felix guy from the other team. I'm not happy with this new DL list entry. boo. King Felix, you bad man.

Today I woke up tired most of all, really kind of dizzy- I wouldn't trust myself to drive like this. I can do stuff- just a bizarre lightheaded feeling is all around me today. I want to lie down, but the youngest one doesn't allow for that right now. I am being zapped of energy today very easily. Thankfully an iPod touch is keeping her attention nice and quietly. Grandma is stopping by to get her soon since Mark has an early evening of teaching lessons.
I don't feel very good. But I don't feel as bad as the other chemo. It's just different. Weird too.
Knees hurt too. I wasn't able to get out to the chiropractor today either. Just a down day.
Not sure if it's the drug or just the times but I just feel like I'm floating through the day. Not really focused on much...... kinda strange.
The surgery is my next frontier. Right now I'm waiting on the hospital planets and personnel to align and give me a definite surgery date so I can add it to the battle map. A major wall for me to climb over so to say. I could say it's a fear, but I'm done subscribing to that anymore. It's so toxic to thoughts. Enough reading of statistics, generic rates, percentages and numbers, blah blah blah. Enough. I'm tired of it and I'm taking out more garbage.
I'll climb the wall and be on the other side a little bruised, but further along my path just a little bit more. The path does not end when radiation is done or the all clear is given. This will go on for the rest of my life. Cancer unfortunately will always be that monster under the bed given my staging.
It's a big thought to occupy your head all the time. Just add it to the rest of them and have a party. Welcome to my porch.
:)



xo

b

Taxol #1

DAY63

Success!
I made it through the infusion a-ok- just a stingy IV hole in my arm. But this time I took an entire Ativan becasue I was freaking out so much. I just don't like chemo.
I know it's healing me, but it harms too and it's brutal and all I do to keep the yuck at bay is the best I can do. But It's helping. It's my boxing gloves.
We got to Virtua/Fox Chase early thanks to no bathroom stops from all this hydration and a good selection of drivers on Route 70- I didn't have to pass one person! yay!

Up 4 lbs, more perfect blood count.
I don't think this tumor shrank any more either. It feels much bigger than the oncologist says. The lump under my arm has not changed at all- but sometimes I'll notice it'll "pop out" of its place to where it's visible through my skin and feeling it is gross.
I hope to hell the surgery takes all of this out. It'll be a week to find out just the whole picture of the tumor's size, how many lymph nodes are infected- it's a hot mess down there. And I'm not happy with it in my home.

I had chemo in a big hospital bed so they can keep an eye on me. The Benadryl + Ativan made for a really loopy me. I could barely speak clearly, although I tried to. I tried. lol.
They also stuck me with a fun drug called Dexamethasone. I remember my dad having this- its a mega steroid that apparently keeps you up for all hours and then a 14 hour sleep crash. eek. I stay up anyway. I wonder if it'll work in reverse then.
No more red pee, no more AC- this is the new drug. I was told nail hardener nail polish would help keep my nails strong. Things like typing (uh oh- shoudl I go to video blogs if my fingernails start lifting?) and using feet and fingers roughly could cause nail loss. Yes- I heard right- I now have a medical excuse to buy more nail polish. WOOOHOOO!

I came home loaded up on drugs and antihistamine- and promptly passed out in bed exhausted.
I'll have the AC still running through my system for the next 4 weeks.
My bald head sweat all over the pillow and I found falling alseep was weird. Probably the drugs.
I couldn't leave the waking world- just couldn't climb the wall to visit Lily White's Party. But i did eventually fall asleep. I'm up now, feeling ok - just a little achy and feeling like a dried up sponge.
Bombing my insides with water.
My appetite is ...eh...I was really hungry after chemo despite eating a tomato sandwich, big bowl of broccoli and wheat crackers. Gourmet class right there.

Not hungry now- I want to sleep, and I don't want to to sleep- this stupid tumor is achy right now from getting its ass kicked and I'm thirsty. Kids are at grandma's again.

Yankees play Seattle tonight at 10. ugh. I have a 9 am appointment with Doctor Patel tomorrow and this game is getting in the way. Doesn't help that Mark is coming home around 3am tonight either.
Yanks just acquired Ichiro Suzuki from Seattle- and he dances at bat.
 Mark & I call him lord of the dance.

It's gonna be one tired haul to the boob doctor.
Tomorrow, we figure out the new girls. So excited actually. I keep wondering how. lol.
Mark's excited too. Love that man. lol.

......

Dance On, Ichiro.
The Highlander ...with a bat.

oh and PS! - I am joining Tatum's FUNK CANCER Team in the Making Strides for Breast Cancer walk in October!
If you'd like be one of my donors, click here. I would love it if you could help raise money for the ACS, and amazing organization that helps individual cancer patients above and beyond the call of duty.
Thank you :)

Christmas in July

DAY62

Today was such a great day for the kids. The American Cancer Society held a big Christmas in July party at the firehouse in Point Pleasant Beach- food, games, prizes for the kids, a dunk tank, waterslide, an acoustic band, and ...omg...HOHO. (Melody calls Santa "Ho Ho")
It was for kids with cancer and kids whose parents have/had cancer.
Santa arrived in a fire truck, along with Frosty and Buster. Buster is the nondescript yellow monster creature for the Lakewood Blue Claws, a Phillies farm team that is based in Lakewood about 8 miles away from here. Minor league baseball.
Santa gave out gifts, as per the child's letter to Santa, that needed to be sent in in the beginning of July- Both of my girls got gift cards for Barnes & Noble and Target. And I won a gift certificate for a local Italian Restaurant too. It was nice to see the kids have a great time, forget about reality for a second, and connect with other kids who know how they feel.
I met a woman who had gotten through her trip through breast cancer-ville, and was just getting over her operation for cancer of her thyroid. She had a scar across her neck. We started talking and I found out her cancers were completely unrelated to each other, and she had seen the thyroid cancer on an MRI she was getting for her breast cancer. She had 2 sons, 1 little boy was 3 and the other was about 8. She was Vietnamese, with no history of cancer in her family at all. She came to his country and started eating large amounts of chicken and fell in love with pizza. She is convinced the American Diet gave her the cancer, and she told me how the Vietnamese diet where she is from has no cheese or any dairy at all.
Funny.
It was nice to meet someone going through the same thing, I'm usually kind of shy when it comes to meeting new people at events and things, especially when cancer makes you feel like everyone is staring at you.
We talked about the Gerson diet too, people diagnosed with terminal cancers turned their lives around with the raw diet and other fun things like coffee enemas. For years and years they are living past the doctor granted "expiration date"  of months and weeks.
Who knows- but it's looking like a good plan of action after this chemo stops.
We had a great conversation though, she went through everything I am , and we had a nice bonding talk involving our periods, fingernails, and chemo anxiety.... what you usually discuss with strangers, of course!  I hope I get to see her at the next event.

Today I had my first baseball bat to the leg and knee bone pain. This is going to be fun :)
New chemo Taxol tomorrow. As always , the eve of chemo anxiety......  Kids are at Grandma's and I miss them both very much. and Mark is out recording tonight so I'll be by myself.  Time for game day attitude adjustment, meditation and early bedtime.

and water.

dem bones

DAY61

The energy fueled craziness for three days straight ended Wednesday night- I was on and then like a switch- it flipped. I hit a wall, got sick to my stomach and then fell asleep on the couch. Exhausted. The next day- Thursday- I went to work and really went downhill after lunch- around 1 I started to get sick and had to leave work early and doing my best to keep it together enough before I had to go home.....
It's frustrating not knowing how you will feel from one day to the next. One minute to the next.
It messes with simplest of plans, and I'm not in control. It's hard to give that up to a drug.
One minute you feel GREAT, then little things happen to signal the sonic boom. Thursday I was sitting there trying to do simple math at work. 29 + 9. For the life of me I forgot for a second how to add, and I had to take out a calculator to double check myself.
So weird.Shortly after that- boom. I was Done.
So I spent all of Thursday night completely out of energy and on the couch, feeling like crap.... and my bones- they ached. Annoying as hell.
I was able to work Friday- but it was a little rough. i didn't push myself, though.
Blood test for Monday's chemo begin-again and dinner at mom's, followed by 2 children not going to bed until well past 9. Long day.
My legs hurt by the end of the evening, Mark & I fell asleep watching a late Yankees game.
Sheer exhaustion and bone pain for the last 3 days.
I was enjoying that rush of energy though. I miss it.....

Anxiety once again setting in for the Taxol Monday. I'll be in a hospital bed for a slow 3 hour drip and they are going to be watching me like a hawk through it to make sure I have no reaction. Some people don't react very well to this drug, some do.
And either all my hair will fall out (the ones that are left), or it'll start to grow back.
I wonder what it will feel like, how my body will respond to it, if it will like it or not.... It doesn't seem like a stressful thing to think about, but it is. If my white blood cell count gets too low, I have to skip a week. I have no Neulasta  shot to boost my WBC counts either....
We shall see.

My eyebrows are starting to fall out and I have considerably less eyelashes than I did a week ago. You can't see them unless I wear mascara. Oh lovely mascara!!! I noticed my skin is starting to change too.

Dragging achy bones and tiredness is Saturday. Mark wants to go to Island Beach State Park, but I think it'll be too much.
a 2 year old + a beach + diapers= the true stamina test!!!

I feel sick without the sick, if that makes any sense. But i need to go out and gets ome fresh air for longer than a few minutes. It's been 100 degrees and a chilly and rainy 62 degrees in a matter of 3 days here. You can't really do much outside in either condition. I did spot a rare local ice cream truck that serves it's homemade ice cream the other day. What a blessing. Their ice cream is some of the best. and ice cream has been good in cooling the burning in my stomach. I don't eat it so often so I make it count when I do.
Too hot or too cold, today is baby bear day. JUUUUST right..... I'll enjoy it with my family and a husband who has this rare Saturday night off.
Tomorrow=prep for an early monday run with the Taxol.
Which by the way is made from yew tree bark. I think that's cool. I read an article though that the tree species is facing extinction. 

Tree Chemo..................................

Hexagonal Brainstorm...

DAY57

Go go go go go go.

I went from lethargy Sunday to crazy nuts energy Monday. Today is Tuesday!

Not sure what happened, but I went back to work Monday- after work I was tired, but I promised Azalea I would take her to the craft store since Melody made us leave on our original trip Sunday. We got some beads and jewelry stuff, and I found some cool things on sale like 120 precut fabric hexagons for 7 dollars. "I could make a skirt!" - I thought to myself. I think that a lot when I enter a fabric store. I end up accumultaing half a basements worth of fabric thinking that. I have about 400 skirts and projects that never get made from my ingenious spur of the moment ideas. Like nail polish, fabric is another addiction. So Joann's is like my giant crack house. I also got some good German thread for my serger, a machine I haven't really used in years. I didn't understand why I bought them, but they were 40% off and it's fab German thread. Why not? How hard would it be to whip up an easy hexagon skirt for myself?
came back totally exhausted and needing sleep. So I laid down- nothing. I wouldn't go to bed. I tried for an hour to sleep. Nope. Nothing. Then it started. Melody went to bed early so it left Azie and I to sit down with an awesome Yankees game, and make some earrings. Usually I am on the couch laid out exhausted at this point.
Nope. We made 4 pairs of earrings! I wrestled pliers, I wrestled wire. Go Go Go.
After Azie went to bed, I still had it in me to start on the hexagons.

BY HAND. My head was saying - "Do it old school- you need the quiet meditation......". My heart surprisingly agreed to this late night endeavor with needle and thread.

So I did. I started sewing these little hexagons together by hand in randomness.

The game at that point was at the top of the 8th and tied 2-2 --- I was hoping for no extra innings so I could easily go to bed. All this being housebound and baseball is going to turn me into one of those people who call Mike Francesa every day.
But alas- Ibanez, my bald head twin brother, hit a grand slam and cinched it once again.
Seriously, all these wins make me feel so good- since the winning streak has been since my first chemo. I feel like it's my dad here with me, as we used to watch the games and text each other as the innings went. He'd be loving this season right now. I don't want to hear what you have to say, Yankee haters..... this is our season. and it's one of the little things that keeps me going right now. So let me love them just for now :)

No extra innings once again so I wasn't kept awake, I finally burned out on hexagons and put them down, snipped my threads and laid down to go to sleep. But who slipped me speed?
Not sure where this burst of creativity and energy came from- but I'm gonna ride this awesome wave.... Feeling really nothing but energy- I love it and I'm glad the fog is gone. I AM SMILING.
When I close my eyes, I see nothing but golden horizons.

......
another game tonight, probably more hexagons.......

love!

-b

solar flares of massive proportions......

DAY55

Apparently in my dreams I have cancer too. Last night I was in an old house I once visited that had been turned into a bar in Mercersburg, PA. It was called the Mansion House. I was there with Mark and live music was being played and I was so happy to be out and about- I don't even think I realized I had cancer till someone I knew stopped me and said "Jesus, you look sick.... How's the cancer? You look terrible".
Thanks.
lol. I can't even get away from it in my dreams. Time to end that.

It's a major solar flare in space right now that's causing hallucinations, vivid dreams, ghost sightings, etc.
I'll blame it on that.

This week has been bittersweet with the end of AC and the return to finally feeling somewhat normal. Although lately if I do so much as vacuum the floor, move some furniture, or deal with a 2 year old for an hour, - I'm whipped. I need a nap. And finally, I'm agreeing with my body in napping and lying down to rest when I can.

I also have a cough that won't go away- it's not anything that has gunk, or respiratory infection--- it's bothered by air conditioning, and intense outside heat..... it just won't go away.
Reading online has me seeing that other women going through the same chemo have the same thing.

I go back to work tomorrow for the week- I hope I can cover some hours without draining every bit out of myself. I hate leaving people hanging like that. I'm just getting more and more tired and every day is different.

I do my best to conserve as much as I can, and Mark has been such a help with dishes and laundry....and the kids....

I was also really psyched to finally sit down last night after Melody went to bed. Azalea and I watched Edward Scissorhands and I sat down....to draw. I hadn't picked up that pen to sit and draw since any of this happened and it felt good to create something again. I hope to keep doing that. Anything that makes you forget cancer is a treasure.
it's still a work in progress. I am noticing too that what's in my head is different now as well- more attention to detail and taking my time...... I have so many art projects I am itching to start - it all depends on how I feel though. It elevates me so much. I do miss painting, sewing and tie dye so much. It just expends a lot of energy I need to conserve right now.
I have another blog that I started a whillllle ago- but at the beginning of the year, I was DETERMINED to blog a new piece of art every day. So much for that project. I tried, I really did..... Obviously I wasn't able to keep that up- the art suffered a little- and now I'm hoping to start the creative process again. It heals my head. And heart.
I still need to go back to that blog and post a reason why it stopped.

Off to the farmer's market in a little bit, then maybe a trip to the craft store to get some earring supplies with Azie, she got her ears pierced and we're going to make some new fun earrings for her to wear now that she's healed!

1/2 + 1/2

DAY53


 Emerging once again into the land of the living-
This takes more out of you with every round- waking up after 9 hours of straight sleep, and still exhausted is a weird feeling.
My ribs hurt a lot today, and arms. and fingers and my skull.
I have a cough that's mild, but hurts my chest everytime I cough.

I was able relax a lot yesterday thanks to Mark and my mom and Azie's help. and of course my great boss at work who is being the best in understanding.

I miss real life. I miss being able to go out and see music when I want, I miss feeling good, I miss normal. (As normal as normal gets in my world at least). I miss people. I miss not having to talk about cancer for a day. I woke up missing it so much today.

It gets lonely sometimes sitting in the house- it's really hot out so I can't be outside for a long time, not to mention the sun. I walk out though to water my veggies, and take in some sunshine when I feel like this.

This whole thing , the ordeal, the experience, the good , the bad, and the ugly slowly chips away at your brain.
I'm sure it's the chemo drugs, but it is a psychological roller coaster.

One minute I'm Rosie the Riveter, the next minute I'm crying because I'm thinking about what my kids see, what I may have done wrong to get this cancer, how bad I feel that others who depended on me are left hanging.... Am I eating enough B vitamins, juicing enough veggies, doing what I can to help myself heal?
Is this cancer going to come back? Am I doing something wrong, why did this pick me?
You think SO MUCH.
And it's hard to hold those detrimental thoughts at bay, but I'm doing it the best I can.

I do my best to elevate past the mire.



I try to saturate my head with television to defer the internal drama- good thing for the Sundance Channel because the crap on HBO sucks. I love birds and Steve Martin, so I sat down with "The Big Year" last night. SO terrible. Feel good movie, my ass. Owen Wilson's character is an asshole, Jack Black was a wuss, and Steve Martin was watered down.
It got my head out of dark clouds though, so it was good for something at least. I just can't believe films like that are actually made and get good reviews. I'd rather watch a Steven Seagal romantic comedy. No one mainstream seems to want to create art with integrity anymore. It's all remakes, recycles of old stories, and retakes on TV shows. The A-Team movie? Really?

Sundance Channel is much better, as is Judge Judy. I love her. She's tough shit. They should name a chemo drug after her, or figure out a way to bottle her attitude because if I could swallow a pill to go Judge Judy on cancer's ass for me, I sure would.
Another day in bed....... Pushing myself to go out was a thought, but I decided against it. I know better. I'll get up and get out at some point......

Just going to relax the ribcage today. no pushing.



xo

b

the last trip around the hell carousel.....

DAY52

Last Neulasta hangover in progress. I felt good enough to sit up at the computer to type this for a bit....

Yesterday we revisited Mephistopheles' Bar, only this time it felt more like a good long jump on a giant trampoline drinking a glass jug of the cheapest wine ever, and eating oysters.
Absolutely immobile for the most part yeterday- I laid in bed and just stayed there. The nasty telltale headache started around 2pm- and then....I was done for the night.
Azalea came back over to stay with me, and Mark came home early- I just sat in bed and ached. Everything hurt.
Bones, skin, head, face, knees, hair.
I took about 8 hot showers, which seemed to be the only thing to bring me back to normal for the 10 minutes I was in there.
Hot water meditation.
The 'me' was split again between body and soul- totally detached of itself.
This time the Neulasta didn't bother waiting the 24 hours, it just hit me. and hit me hard.

I spent the whole night last night wrapped in my comforter sweating my ass off, and if I moved, the headache got worse. And my movement hinged delicately in time with my belly, if I stayed very very still, I wouldn't throw up. So that's what I did. Statue time.

I fell asleep that way and woke up half freezing from all the sweating and the air conditioning, and soaked in sweaty sheets and pillows and comforter. I was so tired I didn't care. I just wrapped my blankies around me and  I sweat more and more and more....

I feel totally exhausted today and totally grateful that this is the last train ride to Hell.
So I'm going to stay in bed as much as I can, sleep and hydrate and get through today.

I am amazed at those closest to me in life right now, the amount of help and kindness astounds me. I still feel like I don't deserve it. It's hard for me to accept help and lie down for a change. It's just the way I am. I cry at the thought of how much hearts are around me. I'm extremely lucky. The energy is so deep, I am able to draw from it every single day when thoughts and body feel rough.
Namaste.

Go right now and tell someone you love them.

.....
keep shining.......

b

Last of the Neulasta!!!

DAY50

No more Neulasta shots!!!

Yes!!
Today is my mom's 62nd birthday, and we invited her over for pizza and a cake my sister ordered from NC, and a nice big green salad.
I rewarded her before she left with the awesome privilege of giving me that last shot. Poor mom- she hates it.
Well it's the last one.

So I guess the AC kicks you in the butt at first, then mellows out, then runs it's course by ending it's run by draining the living life out of you....
I don't recall ever being this nauseous or tired. I feel like a pile of poo today.
So lots of resting. Lots of doing nothing.
The kids are here and spent last night and will be here tonight- then probably off to my mom's for the next 3 nights. After tonight , Mark has 9 straight evenings of gigs, lessons, and recording.

I have a 12:30 appt. with the chiropractor tomorrow and a date with tons of leafy green juice and a kombucha to manage this Neulasta ride again. It helped so much last time, and Phyllis was really psyched to hear I was doing that and it had helped........

As long as the Taxol goes well, and my white cell count stays awesome- I can stay on a consistent weekly schedule of the next round of chemo that will end around October 15th (My dad's b-day)

Kinda weird how both rounds end on both my parents' birthdays....

Looking at the big mastectomy and lymph node surgery November 16th probably.

I meet with Dr Patel in 2 weeks. I'll find out if I'm getting either implants or the procedure where they take the fat out of my belly and make new boobs with it. So I've been eating ice cream just in case they decide to do the latter.
I also have to get genetic testing done to see if I carry the gene what will make this come back and also attack my ovaries. In that case- if I am positive for the gene, hysterectomy also has to happen.
So much fun.
What a ride.

After surgery, its 5 weeks of radiation every day except Saturday and Sunday.
And I was told I was clear for tattoos 4 weeks after chemo ends , but ink the last thing I'll be thinking about if I have surgery at that time. I am frankly TERRIFIED of surgery. I like being present for things in my life....the thought of being out and under a knife cutting into me from armpit to breast scares the living shit out of me. The only surgery I've ever had was oral surgery and still- that wasn't fun either. I think that's the hugest source of my anxiety with all of this.
This is different. Good lord.
So much to process today-
on the upside, I was told my hair might actually start to grow back during the Taxol treatments! yay!

Rooting for you AL.... would be nice to see the World Series in the Bronx ;)

......

good night~
xo
b

chemo4

DAY49

*THE LAST AC TREATMENT!*


So good to see those drugs enter into my system via IV for the LAST time. It's all the Adriamycin I'll ever be allowed to have in my life. Any more will ruin your heart. Cytoxan. uck. It's all nasty, not to mention the Neulasta shot.
 But as of today, I AM Done with AC!!!!
A small step for a bald lady, a giant leap for boobs.

So happy, yet really tired and kinda sick feeling now.
Phyllis saw me today, the tumor has not changed this time. It has shrunk to half it's size so far- it's about the size of a quarter. But that's good news! Blood was excellent too.
She asked if I had started to feel the AC more recently and it's true- the bones, the severe exhaustion, appetite and nausea issues- it all just hit me in the last week pretty hard.
My really good days are deceiving- I did - once again- too much and I paid for it for 2 days this time instead of 1.
So I have to be better in sitting still. I rested with the tv on yesterday and of course the documentary on Islamic art  comes on and I had to watch it cause that stuff s my jam. I love Islamic art and it's mandalas and pointed stars, holy moly. No sleeping- I did rest well.....but I need to sit still and quietly a bit better.
sitar music......


This last AC session went good- Mark & I were in the chemo room by ourselves and then the lady from 2 weeks ago with the Cheetos came in.
I got nauseous at the thought of her eating cheetos this time! It wasn't her at all, it was the sound, and they sounded just like the Tings. ugh. I'm getting sick typing this right now. lol.....
She didn't eat cheetos though, so all was good with the world.

It's so weird what your body attaches to the chemo experience - random things like hospital tile, or wallpaper trim, fish in a fish tank, food you eat.... and makes it something that you will always associate with chemo and therefore makes you ill to look or think about it. So weird.

My next round of Taxol, in 2 weeks ---July 23rd starts a 12 week , once a week run of this different chemo.
I'll be done with this around October 15th (my dad's birthday).
Not sure how it'll be, we'll just wait and see. Load up on chiropractor and greens.....
My final Neulasta shot is also tomorrow and it's my mom's 62nd birthday......
Probably going to attempt a dinner here with minimal work for her. ......


Headed to early sleep tonight.... Mark's playing tonight in Seaside Heights so he won't be home until late...I pray for an early kid bedtime....




Grateful for waking up to a gorgeous morning, and all the things the day has brought me.

Shine on, all.

xo
b

excellent.

DAY48

Props to the person who put this graphic up ... funny how i blogged right here how the Yanks started winning the day I started chemo. lol. May 22.



They played terribly last night and Boston won. bleh. As I type, they are currently totally awesome in the bottom of the 7th.


....LAST AC CHEMO TOMORROW!!!!!
It's early- (8am) - I have to leave here at 6:30.......

Anxious as hell and as always...... but thankful it stops. So thankful. I still have that Neulasta shot, but after this last time, I don't fear it so much anymore.

I was given a small amount of my father's ashes this evening so I could take him with me to treatments, I put him in a gorgeous handmade glass and silver wrapped bottle that was made by some amazing artist friends I have. It feels nice to be able to have 'him' with me through this. His remains have been confined in one box until now. ;)

Next up,,,, the extract of the pacific yew tree- TAXOL.

coming in 2 weeks.

onward to tomorrow......

xo
b

7

DAY47

7/7 today....I was going to try and draw up a 7 tattoo for myself today actually not realizing it was July 7th.
7 -- Mickey Mantle's number. "The greatest" said my dad. My oncologist loves him too.
So my 7 tattoo is for the divine guidance and faith in those who like to see me kicking ass.
Yanks won today's earlier game against the Red Sox , double header --- Bosox just went ahead by 2 runs as I typed this. Shit.
I don't like watching the Yankees lose. They did pick up the wins a little more once I started chemo, lol.
I noticed that Ibanez, Jeter, Joe Girardi, and most of the other guys are all bald too. Never thought I would say I match the coiffer of the dugout. Or the ball, for that matter.

I hope they take it.

I'm so tired today- yesterday I felt so awesome and I got my mom to watch the kids and I headed up to the boardwalk with my coworker Alexis and my brother Jon to go see Mark play at an outdoor beach bar at the inlet in Point. Perfect weather, excellent people- it was great, but it took a lot out of me today.

I woke up realizing this last AC chemo is Monday and it'll kick you in the mental ass realizing it - I just am not a fan of feeling so good, finally....and then...... bam. another shot.
Thankfully it's the last of the 4 AC's.

My thoughts got the best of me today and I had a few breakdowns. So many thoughts.... If this will ever come back, if they find it someplace else, feeling bad for your kids and husband having to deal with this too, dealing with a darkness sitting in the proverbial closet for the rest of my life, so much unknowns. It's nuts. You get so tired of the chemo, the drugs that drop an anvil on you and your organs and cancer and LIFE. It weighs on you and it's like I have to go and jump out of that plane again. It gets inside your head too much sometimes.
I had to get my bloodwork done for Monday's chemo- so I headed to the local stick shop (LabCorp) and got my blood drawn. Sitting in a packed waiting room- you can feel the staring. I don't like that either. I'm not a zoo animal.
I was just tired and down and when I got my blood drawn- the nurse who did it asked me if this was for my white blood cell count. I said yes- and she shared her story about having a nasty fight with non- Hodgkin's lymphoma years ago and when she kicked it's ass, it came back after a year clean in her kidney and she had to have it removed. She mentioned she had lost her hair a few times. It was soooo awesome to have a stranger just open up to me like that because I was just not having a good day in my head at that point.
She and I chatted a bit and when I got done, I found out the peanut butter craving is a common thing.  She told me that she didn't like talking about her cancer, but when she sees people like me, she tells her story to give them a light to look forward to.
Some divine turn had me in this woman's little blood test cubby , and all she said to me was just what I needed to hear at that moment or my day would have been gloomy.
I was so grateful at that moment , I hugged her as I left and she said "You are doing great. Keep going!"
That's what gives me hope for the human race- people like her.

After that I went into work for a few hours to let myself in the building and get a bunch of stuff done I wasn't able to on Friday, and able to set up the week's work for Alexis until I came back the following Monday.
Chemo is the shittiest vacation. lol.

Went to mom's to get the kids and Melody had no nap today so it was an awesome early bedtime. And for that I rest and get my feet up and hit the hay.
......

After the game, of course.....


Be excellent to each other.....

xo
b

thank you part 2.

DAY45

Missing festival season a lot. Living vicariously through friends' facebook pictures.....
....soon......soon.

Glorious divine intervention today of my mom spotting a really cool vintage drop leaf table curbside that extends out larger for more people. Folds up nicely- - really high quality wood. It's beat up- but when my mom said "I just found the greatest dining room table!". I hear table and it translates into canvas.
Amazing woodworking skill in this table says to me my dad sent this to me as a gift. Thanks Daddy. I can hear him saying "You don't see furniture like this anymore. You see that edge? That's quality. Feel that. See that grain? That's sharp. Really sharp"..... My dad was Holmes on Holmes. no doubt (He loved that show too). Sharp was his word for "badass".

All my projection of new projects and keeping myself creating through this crazy brain forest of chemo and cancer stuff....and i manifested a table. And 4 chairs.
The lottery win is waiting for the perfect day, I say.

I'm so psyched. With chemo coming on Monday, I won't be able to do much to it until next weekend, but oh boy. Gve me right angles and a paintbrush and symmetry happens.
sooooooooo excited!

Fireworks were awesome. The joy my kids had and Melody talking about it all day today "Oh pre-tee sparkles! Ocean!" was worth the 2 hour drive home that should have been 10 minutes.

A brilliant orange moon rose above the ocean and was a perfect backdrop to a sweet evening on the beach.

I feel great.
Feet swelly a bit, but otherwise great.
I'm feeling the best I have in a week.....! Even considering I got only 4 hours of sleep and still woke up for work way early. go me!


Tomorrow.... music at the beach . No traffic this time.

Ammmmeeeeeeeeeerica!!!!!

DAY44

Feeling a lot better today!
I love my life. I love my husband, I love my kids. Days off from work where I don't feel nauseous or sick are few and far between- but this is one of them, and for that I am grateful.

I woke up ready to cast off stagnation-
I needed to CREATE things, which needs my work spaces to be cleaned up- so that's what I did- I'm typing on a new freshy clean desk and my sewing room is ready to go after I clean and oil my babies. and get a chair.
I love it.
Tonight we see fireworks, and the work continues tomorrow.

I've been planning on what I'm going to do when I'm finally done with this chemo -
My first thing is ink. I was poised to get my next piece- ready since december..... a golden spiral / ratio intermixed with a color wheel mandala, scissors and the digits of pi. so ready. and boom. the hammer fell.
gah. I have a few more planned- especially one for the "fuck you cancer" celebration when i get the all clear....My oncologist looks a little sideways at my tattoos, but he appreciates my spirit- so I guess I can't win em all.

 All the things I wanted to do, which I kept putting up won't be put off anymore.


If anything is going to make me 'carpe diem' from here on out- it's this.
Time to stop sitting on my butt and procrastinating. I'm really terrible at it, I wish I wasn't. I do it to myself and put myself last because my Virgo nature is to serve others. And I take on too much all the time, and overload myself with enough work and emotion to slaughter any other zodiac sign. I'm lookin' at you Capricorn. Me needs to take a front seat from now on. Is that ego?

Do it now is one of my new mantras.

I started by cleaning off my work spaces and I am ready.

My fingers are feeling numb in the tips- maybe keeping up with painting and drawing might keep it at bay. maybe?

My foot is also much better today- but I'm not a fan of wearing flip flops all over the house. not at all.
Time for dinner and beach.


Happy 4th y'all.

much love
xo
b

fred flinstone feet no more....

DAY43

Got through 2 days of work somewhat-
I've been juicing a lot, and feeling pretty good- I'm just getting tired a lot more easily.....
Feeling ok.... I don't get heartburn usually but it's here today....small mouth sores have been popping up every so often.
I hope this isn't a result of pushing myself too much this weekend. That would suck.

I had another awesome Reiki session with Beth again last night....really intense- I pretty much left my body during the entire thing and Beth wound up getting sick afterwards a little bit. I felt bad.

Another stupid thing I noticed is my feet. I hardly ever wear shoes- I've always been that way. My feet are toughies, so they were feeling ok until yesterday when I noticed that part, right under the little piggie that went wee wee wee all the way home, that touches the floor hurt. Like I stepped on a sharp rock somewhere and it hurt later on. It bothered me a little last night but nothing too bad. Felt ok today- I just thought I bruised it somewhere.
Until today when Melody asked me to take her outside and see the flowers (all the container gardens and vegetables growing outside) - I picked her up to show her the plants for a quick minute- and walked out barefoot on the concrete and now my foot REALLY hurts. I didn't walk on anything but flat concrete.
I put flip flops on and iced it a bit- but it's swollen now and I can't put too much weight on it.
Ugh.
Doctor Google tells me this could be what they call hand-foot syndrome, a side effect of the chemo drug Adriamycin. It apparently finds its way into small capillaries in the feet and hands, and then leaks out into surrounding tissue when those capillaries get injured. and that chemo drug is not kind to tissue. It's irritating.
No more bare feet. Nancy, you told me that too and I didn't think a walk around an area rug would do much damage.
I called the doctor on call at Virtua just to make sure and he told me to ice it - I may have stepped on something and broken a blood vessel. He told me if it's worse tomorrow, Dr Cairoli will be the guy on call and to get in touch with him then. Until then, ice.

You can't diagnose anything over the phone.

Looking forward to seeing some fireworks on the beach - not sure if Asbury Park or Seaside Heights will be the town of choice just yet.
My town is just way too small with too many cars to get caught in the middle of during fireworks traffic....

No work tomorrow- just Thursday and Friday and then back to AC #4 on Monday. 8am sharp.

and speaking of extremities- my hands have been itching to create something lately. It's driving me nuts to not be able to sit and make up some art because I'm either too tired and need to lie down or the energy it takes to bust out all supplies and then clean up after a major dye session or sewing project.
I was able to get some computer art done that took some minutes. It satisfied the hunger a little bit like a bag of peanuts in an airplane.
I also got to digitize a painting of my friend Jonathon Blake's (Crazyredbeard) into embroidery today. With glow in the dark thread!  Not my art- but it was fun recreating it in embroidery. :)

Here's to an early night of rest, and better feet tomorrow....
love....


b

thank you :)

DAY 41.

the words